Huge amounts of health-related information of different types are available on the Web. In addition to authoritative health information sites maintained by government health departments and healthcare institutions, there are many social media sites carrying user-contributed information. This study sought to identify the types of drug information available on consumer-contributed drug review sites compared to authoritative drug information websites—what types of drug information are common and unique, and how they differ in nature, detail and usefulness.

Content analysis was carried out on the information available for nine drugs on three authoritative sites (RxList, eMC and PDRhealth), as well as three drug review sites (WebMD, RateADrug and PatientsLikeMe). The types of information found on authoritative sites but rarely on drug review sites include pharmacology, special population considerations, contraindications and drug interactions. Types of information found only on drug review sites include drug efficacy, drug resistance experienced by long-term users, cost of drug in relation to insurance coverage, availability of generic forms, comparison with other similar drugs and with other versions of the drug, difficulty in using the drug, and advice on copying with side effects. Drug efficacy ratings by users were found to be different across the three sites. Side effects reported on drug review sites are vividly described in context, with user assessment of severity based on discomfort and effect on their lives. Users also report side effects not found on authoritative sites.

Excerpt from the Conclusion section

This study sought to identify the types of drug information provided on drug review sites compared to authoritative drug information websites. User reviews for nine drugs (three drugs for each of three chronic diseases—diabetes, hypertension and asthma) were downloaded from three drug review sites and compared to drug information on three authoritative websites.

The types of information found on authoritative drug information sites but rarely on drug review sites were storage recommendations, available forms of the drug, recommended time and method to consume drug, pharmacology, special population considerations (i.e. pediatric, geriatric and pregnant patients, and lactating mothers), contraindications and drug interactions. There were differences across the three authoritative sites in terms of depth and detail of information, how the content is structured, and presentation style.

Types of information common to both types of sites were purpose and uses of the drug, dosage, warnings/precautions, and side effects. However, drug review sites provide additional information. Whereas authoritative websites indicated recommended starting dosages and maximum daily dosage, drug review sites give a sense of the common drug dosages. Side effects reported on drug review sites are vividly described in context, with user assessment of severity based on discomfort, inconvenience and effect on their lives. Users also report side effects not found on authoritative sites.

Types of information found only on drug review sites were drug efficacy, cost of drug, difficulty in using the drug, comparison with other similar drugs and personal advice and encouragement. Drug efficacy ratings by users were found to be different across the three sites. In WebMD, drugs with more reviews tended to have lower aggregate ratings. Users make efficacy comparisons between generic and brand versions of the drug, between new and old versions, and with other similar drugs. Long term users may report on drug resistance or decrease in efficacy over the years. With reference to cost of the drugs, users alert readers to drug subsidy programs and generic forms of the drug.

It is clear that user postings on drug review sites contain several types of information that are useful to patients, caregivers, health professionals as well as drug manufacturers. Two kinds of information will be of particular interest to patients and caregivers—efficacy and side effects. Authoritative drug information websites do not provide an indication of how efficacious a drug is, and what the patient can expect. User postings can provide an indication of how fast a drug works and what kind of improvement the patient can expect. Some patients post actual physiological parameters such as blood pressure and blood glucose levels.

The sites also offer aggregated efficacy ratings by users that support comparison between alternative drugs. These have to be interpreted with care. Actual ratings can vary from site to site. In our opinion, ratings on websites such as PatientsLikeMe where users have to register and are expected to enter information about their health condition regularly maybe more trustworthy than sites that make it easy for users to post one review. The latter type of site is likely to be biased towards negative reviews, as unhappy users are more motivated to post reviews. Many factors can affect a user’s efficacy rating. Severity of side effects and their impact on daily life appear to have a substantial impact on efficacy ratings. So, lower efficacy ratings may reflect severe side effects that affect a small proportion of patients. It is important to review the unstructured comments to understand the reasons for low efficacy ratings. Also, sites with few postings for a particular drug and are not active may not provide reliable ratings.

User postings also sometimes compare the effects of different versions of a drug, especially between generic and brand versions. The comparisons are of course anecdotal and informal in nature, and may focus on the overt rather than internal clinical effects. Users may also contribute information about instances of drug resistance and decrease in efficacy with long-term use. This information may be provided in the context of the patient changing, reducing or discontinuing medication.

The user postings contain information about typical drug doses and their relation to treatment efficacy and management of drug side effects. Drug doses may be adjusted by the doctor or the patient without the doctor’s knowledge in the hope of increasing efficacy or reducing side effects.
The above information is potentially useful to doctors, particularly with respect to new drugs or new versions of drugs that the doctor may not have experience with and do not have case information from the doctor’s own patients. Pharmaceutical companies can also gather a sense of how well the drug is working directly from patients.

User postings also contain a lot of information about side effects. The lists of side effects on authoritative sites are dry and expressed in medical terminology. Side effects reported on social media are described in everyday language and in more detail, and therefore more understandable. They are also described vividly in the context of the patient’s medical condition and daily life, and are easier to remember. The severity of side effects is assessed in terms of how tolerable they are and their impact on quality of life. Overt side effects, particular those that impact their daily lives, are more likely to be reported. Side effects that are internal and not overtly obvious may be under-reported.

This information is useful in alerting readers to conditions that are possibly side effects of their medication, which might otherwise take them longer to realize. Readers can also learn of coping strategies to deal with the side effects. Doctors can learn about how particular side effects can affect patients’ daily lives, issues encountered by patients, and patient behavior that affects their recovery. They can also counsel their patients on coping strategies.

In addition, users also reported a variety of side effects that were not stated on authoritative sites. While most of the instances of “new” side effects were isolated cases, there were a few side effects that had a noticeable number of reviewers reporting. For example, twelve reviewers complained of swelling and eight reviewers complained of low potassium levels after taking Hydrochlorothiazide. Pharmaceutical companies and government regulatory bodies can monitor the side effects reported on social media sites to see if there is a trend of new side effects surfacing that were not previously known from clinical trials.

User postings also contain information about practical issues such as cost and affordability, and issues in consuming the medication and following the treatment. Readers are alerted to cheaper generic versions, subsidy programs and alternative sources of the drug. Doctors and pharmaceutical companies are alerted to affordability issues and lack of insurance coverage for the drugs. Pharmaceutical companies can learn about problems patients are having with pill size, inconvenient pill dosage and taking the drug multiple times a day.